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End-of-life decisions: an important theme in the care for people with intellectual disabilities
- Author:
- WAGEMANS A.
- Journal article citation:
- Journal of Intellectual Disability Research, 54(6), June 2010, pp.516-524.
- Publisher:
- Wiley
End-of-life decisions in the general population are receiving prominent attention in some countries but little is known about how this impacts on people with intellectual disabilities (IDs). Medical advances have increased life expectancy for people with ID, changing dying from an acute to a protracted process for many. Also relevant is the development of patient empowerment within the care context. This retrospective study of the prevalence and nature of end-of-life decisions looked at the files of people who died between January 2002 and July 2007 in a Dutch centre providing residential care for 335 people with IDs. One or more end-of-life decisions were taken in 27 of the 47 cases. This was a non-treatment decision for seven residents; possibly shortening life expectancy. Families were involved in decision making in half of the cases. No information was discovered about the process of end-of-life decision making and there was no evidence in the notes that any of the people with IDs was asked for their opinion when end-of-life decisions were taken. It appears that medical end-of-life decisions played a part in the deaths of a significant number of people at this centre. However further studies are needed to better understand the decision-making processes.
Emotional and behavioural problems in adolescents with intellectual disability with and without chronic diseases
- Authors:
- OESEBURG B., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 54(1), January 2010, pp.81-89.
- Publisher:
- Wiley
Adolescents with intellectual disability (ID-adolescents) and those with chronic diseases are both more likely to have emotional and behavioural problems. This study assessed the prevalence of emotional and behavioural problems in ID- adolescents with and without chronic diseases and the impact of chronic diseases in ID-adolescents on the likelihood of emotional and behavioural problems. The study involved a secondary school sample of 1044 ID-adolescents (12-18 years) in the Netherlands. Parents completed the Strengths and Difficulties Questionnaire, questions about chronic diseases and about the background of their child. Prevalence rates of emotional and behavioural problems were generally high in ID-adolescents with chronic diseases (45%), compared to ID-adolescents without chronic diseases (17%). The likelihood of emotional and behavioural problems was high in ID-adolescents with two [odds ratios (OR) 4.47] or more than two chronic diseases (OR 8.01) and for ID-adolescents with mental chronic diseases (OR 4.56). ID-adolescents with somatic chronic diseases had a high likelihood of emotional and behavioural problems (OR 1.99), in particular in the combination of somatic and mental diseases (OR 5.16). The authors conclude that chronic diseases in ID-adolescents, in particular mental diseases, tend to increase the likelihood of emotional and behavioural problems. They suggest this should be taken into account in the provision and planning of care for ID-adolescents.
Rehabilitation of low vision in adults with intellectual disabilities: the influence of staff
- Authors:
- SJOUKES Liesbeth, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(2), March 2010, pp.186-191.
- Publisher:
- Wiley
Research in the Netherlands has shown that the risk of visual impairment and blindness is ten times higher for adults with intellectual disabilities aged 18 and over than in the general population for adults aged 55 and over. This study explores to what extent carers act on treatment advice for low vision in intellectual disability services and how this relates to their familiarity with the advice. The authors followed 60 adults with a recent diagnosis of low vision during 12 months after their individual intervention advice. Questionnaire scores of carers’ familiarity with and appreciation of the advice and the quality of implementation were analysed. Familiarity with the advice was reasonable or good in 41 cases, appreciation was positive in 34 cases, and implementation was reasonable to complete in 20 cases. Familiarity, appreciation and implementation were not significantly related to severity of intellectual disability or severity of visual impairment, and implementation was positively correlated with familiarity but not with appreciation. The authors concluded that it is important to keep professional carers knowledgeable and informed to improve the quality of low vision rehabilitation.
Interviewing victims of sexual abuse with an intellectual disability: a Dutch single case study
- Authors:
- NIJNATTEN Carolus van, HEESTERMANS Marianne
- Journal article citation:
- Journal of Social Work Practice, 24(4), December 2010, pp.391-407.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Working with and interviewing people with an intellectual disability who are (suspected) victims of sexual abuse is a challenge for social professionals. This article is about strategies used to deal with conversational problems in the different stages of suspecting abuse and dealing with post-abuse traumas. The study aimed to analyse the communicative approaches against the background of different types of interview. It looked at a clinical analysis of a case with five encounters between a female health professional specialising in this type of interview and a 32 year old woman with autism and with intellectual disabilities. The meetings between the professional and client lasted about one hour each and all were videotaped. The analysis discusses aspects of the general assessment interview, the appraisal interview, and the trauma-related interview, with extracts from the transcripts. The authors note the modes of questioning required and the importance of the professional avoiding actions that might bias a possible future police interrogation.
Maternal parenting stress in families with a child with Angelman syndrome or Prader-Willi syndrome
- Authors:
- WULFFAERT Josette, SCHOLTE Evert M., BERCKELAER-ONNES Ina A.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 35(3), September 2010, pp.165-174.
- Publisher:
- Taylor and Francis
To assess maternal parenting stress mothers of 24 children with Angelman syndrome (AS) and 23 children with Prader-Willi syndrome (PWS) completed the Nijmegen Parenting Stress Index-Short (NPSI-S), the Dutch version of the Developmental Behaviour Checklist-Primary Carer, and the Vineland Screener 0-12 years assessment instruments. Children were aged between 2 and 12 years and were living at home. Maternal parenting stress was coded as high in 58% of mothers with a child with AS and 26% of mothers with a child with PWS. For both syndromes no relationship existed with the child’s gender, age or behaviour problems. In PWS there was no effect on level of functioning. Overall, more mothers with a child with AS perceived high parenting stress. When children showed low levels of behavioural problems this difference was contained. However, when children exhibited severe behavioural problems, parenting stress was the same for both syndromes. The authors conclude that the findings suggest that professional support is needed for families with a child with AS because stress levels are high in a large proportion of mothers, which can have a negative influence on parenting behaviour. In PWS the need for support is more prominent when the child exhibits substantial behavioural problems.
Attachment behaviour towards support staff in young people with intellectual disabilities: associations with challenging behaviour
- Authors:
- DE SCHIPPER J. C., SCUENGEL C.
- Journal article citation:
- Journal of Intellectual Disability Research, 54(7), July 2010, pp.584-596.
- Publisher:
- Wiley
Attachment behaviour is considered important in the prevention of dysregulated behaviour due to emotional distress. Because people with intellectual disability (ID) are less adept at dealing with stressful situations on their own, the support of an attachment figure may be especially important for them. This study examined the role of support staff as targets of attachment behaviour for young people with ID by testing the hypothesis that those who more often engage in attachment interactions with group care staff are less at risk for challenging behaviours. The study included professional caregivers' reports of attachment behaviour across different relationships to address the relationship-specific nature of attachment behaviour in a group care context in the Netherlands. Two support staff rated attachment behaviour in 156 participants (69% male, age range 3-23, median age 9 years) with moderate to severe ID in a group care setting using the Secure Base Safe Haven Observation list. Challenging behaviour was also rated using the Abberant Behaviour Checklist. Young people who showed more secure attachment behaviour towards professional caregivers were less irritable, less lethargic and less stereotypic in their behaviour. Two factors, the absence of high consistency in a person's attachment behaviour towards two different caregivers and the independent contribution of each of these relationships to explaining differences in lethargy and stereotypes, point toward relationship-specific attachment behaviour. Preference in attachment behaviour towards specific caregivers was not associated with challenging behaviour.
Introduction to the Dutch De Borg institutions
- Author:
- ROOS Jacqueline
- Journal article citation:
- Journal of Learning Disabilities and Offending Behaviour, 1(1), April 2010, pp.29-32.
- Publisher:
- Emerald
In the Netherlands there are different facilities for the treatment and care of mentally disabled people: ordinary care institutions where people live and work; mental health care institutions that provide treatment; and specialised treatment units for people with learning disabilities and severe challenging behaviour. In this article the author introduces De Borg, a collaboration of five institutions in the Netherlands for adults with mild learning disabilities (intellectual disabilities) and severe problem behaviour. These institutions have different backgrounds: one is a TBS facility (a special forensic psychiatric facility); one a mental health care; and three for mentally disabled people. All five organisations offer temporary treatment, where clients come in from other institutions and prisons, and, after treatment, leave – normally to lower care institutions for the mentally disabled. A total of 224 beds are available for inpatient treatment and 800 places for outpatients. Previously, all facilities were either low or high security, but there are currently plans to build a medium secure unit for patients with learning disabilities. The author presents some results of the research that has taken place in the treatment units about the characteristics of the clients, and concludes with recent developments in De Borg institutions, such as the creation of a common ‘vision on treatment and treatment programmes’ and the improvement of treatment programmes.
Training staff to manage challenging behaviour
- Authors:
- OORSOUW Wietske M. W. J. van, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(2), March 2010, pp.192-196.
- Publisher:
- Wiley
Prevalence of severe challenging behaviour in individuals with intellectual disabilities is high, with staff consistently indicating this behaviour as being one of the most stressful aspects of their job. This paper describes the development of a training package for staff working with clients presenting challenging behaviour designed to: increase their knowledge regarding challenging behaviour; and to improve the quality of physical intervention techniques. The latter was intended to reduce staff anxiety about dealing with incidents and limit physical risk of injury to both clients and themselves. Sessions concerning theories of challenging behaviour were combined with physical intervention training. Effectiveness was scored using self-assessment questionnaires and observation of staff skills. Training effectiveness was tested in a pre and post test control group design. Findings showed the training programme proved to be effective, where staff knowledge of challenging behaviour and the quality of physical intervention techniques increased significantly. Test scores remained above pre-test levels at follow-up, and staff members evaluated the training positively.
The relation between intrapersonal and interpersonal staff behaviour towards clients with ID and challenging behaviour: a validation study of the Staff–Client Interactive Behaviour Inventory
- Authors:
- WILLEMS A. P. A. M., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 54(1), January 2010, pp.40-51.
- Publisher:
- Wiley
Interpersonal staff behaviour (such as control, submission, friendliness and hostility) is associated with challenging behaviour in clients with intellectual disabilities (ID) and studies have shown the influence of intrapersonal staff characteristics (beliefs, attributions and emotional reactions) on staff behaviour. A key aim of this study was to develop and validate an instrument to measure staff-client interactive behaviour focusing on both inter and intrapersonal aspects. A total of 292 staff members, employed in residential and community services in the Netherlands, completed the Staff–Client Interactive Behaviour Inventory (SCIBI) for 34 clients with ID and challenging behaviour. Construct validity and reliability of the SCIBI was demonstrated by confirmatory factor analysis of a seven-factor model with: assertive control, hostile, friendly and support-seeking interpersonal behaviour; proactive thinking; self-reflection; and critical expressed emotion as reliable factors. Regression analyses showed higher age of the client to be negatively associated with assertive control. Job experience, level of education, type and sex of staff predicted interpersonal behaviour. Also, intrapersonal staff behaviour, including critical expressed emotion, proactive thinking and self-reflection, predicted interpersonal behaviour. It is conclude that the SCIBI can be used to identify staff intrapersonal and interpersonal behaviour and results obtained with the SCIBI can provide new directions for individual client treatment plans and staff training programmes.
The importance of tacit knowledge in practices of care
- Author:
- REINDERS H.
- Journal article citation:
- Journal of Intellectual Disability Research, 54(Supplement 1), April 2010, pp.28-37.
- Publisher:
- Wiley
In the article the author argues that high quality personal relationships between professional and client is an essential condition of professional knowledge. This epistemological claim is developed against the background of current methods of quality assessment that rely on objective indicators. The author provides a philosophical analysis regarding the nature of professional knowledge in the care sector, where the analysis continues on from the concept of tacit knowledge to account for the personal dimension of professional expertise in the care sector. The author suggests that methods of quality assessment describe ‘quality of care’ as being independent to the professional who generates it, and, consequently, quality assessment as currently practiced renders the personal dimension of professional knowledge invisible – thereby excluding it from managerial attention and support. To indicate the relevance of the concept of tacit knowledge, the article offers some observations from the practice of care in a group home for people with intellectual disabilities. The author concludes that a high quality relationship between professionals and their clients is crucial for quality of care, and that this relationship generates the positive interaction that enables professionals to gain adequate insight in the needs of their clients.